Introduction Family caregivers are a great resource for providing dignified end-of-life care. The aim of the paper is to reveal the main pre-conditions for dignified end of life care, based on caregiving experience of family caregivers in Lithuania.
Methods A national representative survey (N=1110) was conducted in April 2021 to identify the opinions of Lithuanian citizens about what constitutes dignified care of terminally ill patients. Opinions of the respondents with direct or indirect caregiving experience (N=146) were selected for this paper.
Results The respondents reported that they decided to care for a loved one at home because of a close relationship with the patient (88.5%), patient’s wish to die at home (51.8%), and multiple issues related with accessibility or quality of professional care (41.3%). The most common caregiving activities were nursing (73.9%), emotional support (57.3%), visiting a doctor (56.9%), managing healthcare process (47.2%), and household care (46.8%). The main obstacles were lack of nursing knowledge and skills (40.8%), lack of professional assistance (33.8%), lack of help from relatives (33.8%). The burdens with potential threat to caregiver’s dignity: psychological burnout (48.4%), physical problems (43.2%), financial difficulties (33.8%). When asked what it is important for a terminally ill person to stay dignified at the end of life, the respondents reported Effective management of pain and symptoms (65.8%), Ability to stay autonomous for as long as possible (39.7%), and Possibility to choose where to spend the last days of life (39.0%) as the top three pre-conditions for preserving dignity at the end of life.
Conclusion Family caregivers are a very valuable resource of ‘humane healthcare’. However, the tasks, obstacles, and burdens they faced during the process of caregiving, also the pre-conditions for dignified end of life reported by caregivers show that higher assistance from social and healthcare systems needs to be implemented to assure dignity of patients and their relatives in Lithuania.
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